Where do we go from here?

J can’t handle the load he’s got right now. He comes home with hours of homework. He gets home at 6pm after XC and we plug at the homework until 9:30, sometimes even close to 10pm at night. A quick supper. No breaks. No downtime. He’s defiant. He cries. His attention span is shot (remember, the kid already has ADHD). He is beyond exhausted (and I am too). His internal clock gets him up at 6:00 am no matter what time he got to bed. Then he goes to school and refuses to work. The past few weeks have been full of rough, defiant behavior. Then he comes home with all the work he was supposed to do in class (but didn’t because of his behavior) plus whatever new homework everyone else is coming home with too. Sure some of the rough stuff could because we were trying to adjust the meds. It could have to do with the 3 weeks of no running. But it probably has a lot to do with being in over his head academically.

I am stuck. I have no earthly clue what this kid is capable of. This kid could read and do basic math facts before kindergarten. I know he can learn. There are some days when we are at home, and the conditions are right (which may include putting Post it notes on the electronic microwave and oven clocks) where he can sit at the table and complete entire math problems by himself. He can determine if the 3 lengths listed of a triangle equals a right triangle or not. He can find the hypotenuse in that list right away. He can plug the info into the equation and tell me with a resounding yes or no if it’s a right triangle or not and the exact reason why. All on his own. Without help. But some days, especially those late night days it’s as if he’s never seen the Pythagorean theorem in his life before. When he’s at school it’s as if he’s never seen it before. Because other things are going on like his anxiety over the clock and whether 1:42 or any other time he hates is going to happen.

That anxiety chips away at his focus. I’m guessing he’s tuning in and out at the rate of every 60 seconds when his anxiety is that high. He’s not able to listen in English (or any other class) to keep up with the lecture. He’s not learning what he’s supposed to and is falling far behind.

It sucks. It sucks because I don’t know what the best educational path is for him. It sucks because I know he does have learning disabilities. But I know if he heard that lecture in English three times and had a written copy of the lecture to follow along with, he would start to get it. It would be like that with any class. Its just that school doesn’t work that way.

The system is just not made for kids like J. And I don’t know what to do about it. And even though I know this kid and know that he is smart and can be capable despite all of the faulty wiring in his brain, it’s hard to see how he’ll be able to meet academic expectations in the time frame and way in our traditional education system.

It’s hard to keep expectations real and in check with autism. Because there is nothing expected or traditional about it. Every autistic kid is very, very different. It’s hard to keep expectations for your child if you’re not sure your child is even capable of your hopes for them (and you really, really try to keep those hopes realistic). But at the same time I feel like I’ve had a pretty spot-on gauge the whole way. After all, it was me who insisted that there was something wrong in his development, not other parents’ or doctors’ observations. It was me who insisted that he wasn’t developing language or really “speaking,” when I’d have people tell me that he was “speaking” and I was just “being extra tough and not counting the words and sounds I should.” My mommy radar knew that even though he made sounds that seemed like words, that he even had a few words, he wasn’t trying to talk with me.

In a weird way, it’s like you get to go through that shock of the initial autism diagnosis over and over again. You get to hear about all the things and ways your kid isn’t measuring up to the standard population over and over again. You’re wrestling with yourself and second guessing if your inner gauge is off. Are you going delusional yourself?

It’s been a demoralizing month on a lot of fronts. The cycles of anxiety and behaviour, the academic challenges. After this month, I’m ready to throw in the towel.

And that’s how I went into Saturday, on what was probably the last meet of J’s XC season. He hadn’t run for 3 weeks. He’d missed 3 meets. He’d only competed one race on his own. He was injured–even though he was so excited to run at practice this week–he was hobbling and painfully slow. I didn’t expect him to finish the race at all. I really didn’t expect him to complete any part of the race without an epic meltdown. Because of his shin splints I wasn’t sure he was even slotted to run. Nope, no expectations at all. After this month, I was done with expectations.

He lined up next to a team who had an athlete with a bib number he has severe anxiety over. I thought right there the race was over before we started–which was fine, because, like I said, I had no expectations. But he pulled himself together (with a little help from some teammates) and ran that 3K, with a drive I’d never seen in him before, hobbling the whole way, determined, holding steady the second-to-last spot. At the halfway point I could see in his face that he was in pain. I met him at different points on the course and asked him about his leg and he’d tell me, “it feels good, it feels good” (which I knew was a lie). Not one complaint at all came out of him. He finished. And he was so proud of himself. He’d been aching to run.

I’ve heard the coaches tell the XC kids over and over this season that they do something so hard that most kids their age are not able to physically able to do or they just can’t mentally push through the things they do. XC is tough stuff. Running at least 4, 5, 6 miles a day is hard.

I eliminated all of my expectations Saturday because I ran XC in high school and still run long distance and I know just how hard it is. I know how much mental discipline it takes. And it’s mostly mental discipline. But then J shows up on Saturday with grit when he needs to have grit. He was a force to be reckoned with. He wasn’t stopping. He was going to finish that race.

Now what kind of expectations am I supposed to have with a kid like that?

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